ER-, PR-, Her2+ Roll call
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Oops! Sorry pushed post too soon!
Im so happy to hear your amazing news @catarina_fm ! All of u ladies here are so inspiring..how u find a way to overcome. You take care of yourself while taking care of other loved ones ❤️ Grateful to know you all!
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@catarina_fm so happy for your PCR!
@grammie2 I think my ONC will make me keep my port a while longer. I have my last DR visit before treatment next Tuesday, and then one more infusion and I am DONE. I will find out how long I must keep this thing (it bugs me often).
I found my infusions to take a long while because my cancer center is very busy and I spend a lot of time WAITING…waiting to get my port accessed, waiting to go back to a chair, waiting for bloodwork to come back, etc. the whole things still takes me a few hours.
The actual infusions are 30 mins each drug with a 30 min observation time in between. I hope your time is shorter.
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Thanks, everyone! Both my echocardiogram and EKG at my pre-surgery appointment came back in the normal range…yay! One week from tomorrow is my surgery. At my pre-surgery appointment, I learned that I am to use an anti-bacterial soap while bathing every day for the five days leading up to surgery. Crazy! Neither I nor anyone in my family had heard of this. I'm to also bathe the night before and use two specially medicated wipes around my entire breast and right side, including underarm. I also have to make sure I put on clean pjs and sleep on clean sheets. My first thought upon hearing this was "Is your operating room not sterile?" lol. I guess I'm just showing my age on this one. ;)
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@beekaycro24 so glad your tests came back good, and the surgery is almost here! It’s such a huge relief when you wake up after the surgery—it’s a big step toward complete healing. I think it’s a bit much to have to shower with antibacterial soap for 5 days! The issue isn’t the operating room not being sterile (it has to be), it’s really the patients... Those of us who shower daily don’t even think about it, but I can imagine there are people who don’t bathe as often. Because of a few, we all have to go through it. I only had to use a special antibacterial sponge (it smelled terrible) in the bath the night before surgery and then again the morning of, before putting on clean pajamas to go get the wire localization done. Then I changed into the disposable gown to head to the OR. They do their best to have us go into surgery with as little microbial load as possible to reduce the risk of infection.
How are you feeling? Nervous? I was super anxious, but you’ll see—it goes by so fast!
@djschmidt1 You're almost done! That's great! 🥰 And yeah, that was my issue during chemo —the waiting time was insane. I always had to get my bloodwork done on the same day as chemo (since I live an hour away, I couldn’t go the day before), and it took at least two hours to get the results and find out if I could go ahead with the infusion. Then there was the wait for an available chair, and after that, waiting for the pharmacy to prepare the meds... Way too much time.
That’s one of the reasons I preferred Phesgo by injection instead of infusion. This way, I don’t have to wait for a spot in the chemo room—it’s just a quick 5-minute injection with the nurse. It’s not pleasant, but I’d take that over having to wait for the chair, get poked in the port, and then sit through the infusion time.
Hugs to everyone!
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Yes, beekay, that soap (I call it the oil-stripper) is necessary several days before any surgery. Not FIVE days, though. I had to do it before my mastectomy and my knee replacement. Anything to prevent an infection, especially with the knee. If the operating room is sterile but the patient is not, it means that the key member of the team has ruined all their efforts.
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Hey all! Reading and catching up. Spent the entire weekend at the hospital with my dad. He is really not doing well and the plan now is to go back to his LTC facility as a palliative patient. Dr feels he is not apt to gain much strength back and will continue aspirating his food. He will be able to eat and drink as he wishes but with the knowledge that pneumonia and such will soon follow. He is 88 and tired, but at the same time is fearful to let go just yet. I'm stressed and worried over him.
Phesgo comment. I received the 5 minute thigh injection from day 1. And continue that during maintenance. Was told that injecting in the muscle was a good way for the drug to work in the body and they've found less SE's doing it that way. Other than some minor aggravations like a few days of a drippy nose/eyes, I have eluded the dreaded explosive D. I still go to the infusion room and every other shot they take blood from my port and flush it. Other times, they usually prick my finger unless they require certain blood tests. So that being said, my port isn't a necessity but not sure if I'm comfortable enough with being cancer free to have it removed. I still have not had any post treatment scans. Only the pathology pCR from surgery. Makes me a bit nervous with this nasty cat HER2. I know a mammogram will be ordered soon, but still no mention of MRI or PET scan.
You ladies keep on keeping on wherever you are at in this journey!!! Hugs!!! And I sure wish this hair would grow more quickly!!!!!LOL
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@grammie2 I am praying for your dad and you. My mother-in-law was the same way. Her children and I were all fighting for her to do rehab and exercise and whatever else the doctor said would help. I finally told my husband she was tired. We should let her make her decisions on whether to continue rehab or just "be". It was hard for him to accept, but once he actually saw it and realized it, it was easier for him to just enjoy the time he had left with her…no lectures, no pushing…just love.
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@mcbaker They specifically said five days, so I guess I'll be using it for five days…lol. Sounds like a lot, but I'll do whatever I have to in this battle. I had just never heard of it before.
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@catarina_fm I'm actually not nervous, just ready to be done with this part of the journey. I try to stay calm…my husband is nervous/anxious enough for twent people…lol. I am a little anxious about the recovery and really hope I don't have to have drains…those look horrendous! I'm concerned with not being able to use my arm much…as it's on my dominant, right side. I did watch a YouTube video on the type of surgery I'll have. It looks horrible, but the scar doesn't look anywhere near as bad as the surgery makes it look like it should. I'm a planner and like to be prepared on what to expect, which is why I Google EVERYTHING.
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Scars fade with time. It is a over-size implant that gets in the way that I can't tolerate. Do what the doctor orders, if you don't, you won't have a leg to stand on if something goes wrong.
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@beekaycro24 good luck with the surgery. I had to use that soap too for few days prior to my bilateral mastectomy. It is strange but the last thing you want is an infection. Sending you good vibes!
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@grammie2 I'm sorry about your dad's situation... It's not easy! Sending strength to both of you! As for the port, I totally understand your fear. Here, if they remove this port and have to place another one, they'll switch to a PICC line in the arm. Actually, my doctor requested that for me since it doesn't leave a scar. But on the day I went to get it, the doctor on duty only had experience placing the regular port, so I ended up with this one. Just to say there are other catheter options available.
I’ll only have my exams after finishing Phesgo—they’ve already scheduled my mammogram and ultrasound for December! I was a bit scared too, but my doctor said I have nothing to worry about since I had a PCR, and Phesgo (which I haven’t resumed after surgery yet) is super effective. So I think you shouldn’t stress too much.
@beekaycro24 I was terrified of the surgery. I’d never had one before and was really scared. I bought several button-up pajamas because I thought I’d have limited mobility (I only needed them for the first week) and thought I’d be in pain. I know everyone’s different, but most people I’ve talked to here had an experience similar to mine: the scars are neat and small, and I didn’t even get stitches, just a special glue. I didn’t have drains. On my breast, the incision was all around the areola, and it’s already healed and barely visible! At first, the breast was very firm and raised, but now it’s almost identical to the other one.
Since my tumor was 8 cm, they had to take tissue from other areas of the breast to fill the space, and I can’t believe how similar they look! There’s a size difference, but it’s perfectly acceptable and I think it will improve. Under my arm, I have a 3 cm incision, and the scar is barely noticeable. I thought I’d never be able to use my arm properly again or sleep on the operated side, so I avoided heavy lifting for a month. But honestly, sometimes I forgot I wasn’t supposed to! 😅 A week after surgery, I was already wearing regular clothes (no buttons). The doctors said I could sleep on the side of the operated arm and even do exercises with dumbbells as long as I gradually increase the weight. I just need to avoid heavy exertion until my arm regains full strength.
I was also told that with only 5 lymph nodes removed, the likelihood of developing lymphedema is very low. I even read studies confirming this. Hopefully, I won’t have bad luck, but for now, I feel normal, my mobility is fully restored (you'll have some exercises to do), and the pain was minimal. I’m sharing this to help ease your mind—it’s simpler than we often think. Of course, everyone’s experience is different, but I believe it’ll go very well for you 😊
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Hi guys - feeling a tad deflated.
Just got the results of my post chemo MRI and while I've had a good response (the total extent has shrunk by 61% overall and the involved lymph nodes have resolved according to imaging), the MRI is still showing residual disease. For context, I have small multifocal tumours in the left breast, which were originally HER2+++, hormone negative.
I'm pleased about the lymph nodes but am feeling a bit down right now. Surgery is scheduled for two weeks time. Looks like it's Kadcyla for me 😞
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Hello my dear @jessybessy, don’t start thinking negatively just yet. A total reduction of the tumor according to the MRI gives a higher probability of achieving a PCR, but a 60% reduction on the MRI doesn’t show whether the cells are alive or dead! After treatment, the tumor may shrink in size but still appear as a mass on the image, even if it doesn’t contain active tumor cells. It is quite common... What did the doctor say? A big hug to you!
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@jessybessy I agree with @catarina_fm. Even though there is something showing, it could be where the tumor has turned into "scar tissue" from where the chemo killed the cancer cells. I was not given a scan after chemo, only the ultra sound for placement of the RFID tags where the biopsy markers were placed for the breast tumor and lymph node. They gave no indication of what they saw when they did the US, only that the placement was successful and a description of where the tags were placed. But my MO and surgeon both could still feel something and both said "scar tissue". I know it is so hard, but try not to worry. Hugs and prayers!
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Don't catastrophize. Only after surgery and lab results will you know. And they look through every mm of tissue. If your biopsy was HER+++, you should have an excellent response to Herceptin.
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@jessybessy We're kinda in the same boat right now…what with my tumor only shrinking a little (even though I can't feel it anymore) per my ultrasound. I did Google what you said, and according to AI it means that further treatment options like surgery are needed. I'm assuming you'll be having surgery sometime soon. Surgery will remove your tumor and any cancer cells with it. You may have to do Kadcyla for the rest of your "year" instead of Phesgo. Nothing is certain until your pathology report after surgery. Don't be discouraged…be thankful there are lots of options out there for us! We can do this. :)
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Hello! Yes I have surgery booked for two weeks today. Was just a tad deflating, I know if it is residual then Kadcyla is not meant to be too bad at all and is very good at preventing recurrence. But obviously I was hoping for the little assholes to have gone entirely.
But at least the involved nodes (from imaging at least) appear to have been sorted out.
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@jessybessy you got the bugger out of the lymph node! In my mind that's where it counts the most. Like the rest of the gang has stated- wait n see. So much is already behind you, just got to go a bit more. Wishing you strength and patience.
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Surgery question! I'm my surgeon's first surgery on Monday (that's a good thing!) and I have to be at the hospital at 5:30 a.m. What should I wear there and home? I was thinking of wearing pjs (they button up in front). I'm assuming I will wear a hospital gown for surgery, but truly have no idea. I do know to have pillows in the car for the ride home. Any other helpful suggestions?
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Hi! Well, I was admitted the day before, so in your case, I’m not entirely sure. How many nights will you be staying in the hospital? Bring two front-button pajamas, a post-surgery bra or a sports bra that fastens in the front, slippers with good grip, and I don’t think you’ll need much else. I also brought my Kindle to read, but I was in the hospital for such a short time that I barely used it. It’s almost time! At home I thought I’d be really sore and have no mobility, and that I’d only be able to wear button-up clothes for a long time, but after a week I was already wearing normal clothes. I hope you don’t have any pain either! Also, something that was really helpful was a special pillow (triangular, I’m not sure what they’re called) so I could sleep on my back. Good luck! 🍀
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My surgery is being done as outpatient. That's why I don't know what to wear. It's my understanding I'll be in recovery long enough to make sure my pain levels are under control and I'm alert. Luckily I have an adjustable bed so I can sleep in an upright position, but will use pillows to ensure I don't roll over to my side anyway. I hope my recovery is as smooth as yours!
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@beekaycro24 hi there, wishing you well on your surgery. I had a BMX and I wish that I had @catarina_fm experience! I suffered from pain (needed strong pain meds and muscle relaxant for about 2 weeks) then managed with ibuprofen. My back spasms were for real and I'm never one to have any sort of back pain. My surgery was supposed to be same day but I ended staying one night in hospital and had to share room with an unruly patient (so wished that I had brought ear plugs) 😆. I had a complication to the way anesthesia intubated me..had some transient laryngospasms and shortness of breath. This resolved next day thank goodness! Wear comfy loose clothes with zip or buttons in front. I got a couple zip jackets to be able to easily access drains. Also cozy slippers! Slept in recliner.
My surgeon had told me after that I had very vascular breasts which was a bit unusual. Guessing that's why I had so much pain?
Everyone is different. Be sure to advocate for yourself! Good luck!
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@snm I'm sorry that you’ve suffered so much 🥺 but your surgery was much more extensive than mine. I had a lumpectomy and had 5 lymph nodes removed, and I recovered very well. A girl who had the same type of surgery on the same day as me had a similarly smooth experience. I hope that the two ladies who still have to go through surgery experience little pain! I didn’t have a recliner, and I must admit it was a bit challenging to sleep on my back. Without rolling to the sides 😅 and I hated sleeping with the bra 😒
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@beekaycro24 I wore sweatpants and button up shirt. I had a similar experience as catarina although mine was outpatient. Had to be there at 7am and was leaving by noonish. I didn't have a lot of pain either but starting a couple of days post surgery, I did have some stabbing pains that only lasted a split second. Those happened for a few days and wasn't often but a two or three times a day. Make sure to wear the sports bra! Mine was tight but not as tight as they should have been and that may be why I developed the seroma. Sleeping was the biggest issue for me. I do not sleep well on my back. I slept with a wedge elevating my upper body. You are gonna do great!!!
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@catarina_fm thanks for letting me know the type of surgery you had. The quick recovery sounds great and @beekaycro24 will bounce back- no problem! Sending you positive vibes!
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i had the same experience as @grammie2, wore sweatpants and button up shirt. Was home by noon and slept all day. Was up and around day 2 with little to no pain. My surgeon put a sports bra on me and had to keep it on for 10 days, I think. To be honest, I have had more pain post radiation in both my breast and armpit than anything. I had a lumpectomy and one or two nodes removed. I wish you an easy time.
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@djschmidt1 how many radiotherapy sessions did you have? I’m a bit scared of this stage. I’m supposed to start next week. The doctor said I would have between 15 and 25 sessions; she was aiming for just 15 but would need to do the calculations based on my CT scan before confirming. Do you have any advice or tips to help protect the skin? I’ve been told to wear a cotton shirt inside out under the bra, and I’ve already bought a special moisturizer for irradiated skin. I also know the exercises I need to do to keep my arm mobile and the daily lymphatic massage for the breast. Thank you!
As for the surgery, I was advised to wear a sports bra for two weeks, only taking it off for showers, and to massage the breast and armpit with moisturizer every day after bathing. Even that wasn’t too uncomfortable because the area feels a bit numb.
And by the way, ladies: next Tuesday I’m restarting the antibody injections, and to my surprise, it won’t be Phesgo but just Herceptin. The doctor said that’s the protocol now… Have any of you followed these new guidelines, or are you still taking both antibodies?
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